hi all
soooo fed up just now, rang for some advice as what to do with my blisters on the tongue to find out i have to go a see Sister as she need to see them, got there had bloods done to find out i have no imune system and might have to be admitted to hospital, but she ask ONC to come and see me and she has let me home as long as i go back on Friday for more bloods as white cells dont exsisit. I have been told that my FEC is too strong for my body to handle so going to rejuse it, not too happy about that.
so home now with more injections to take and medication for my blisters, just wish i could eat properly but too sore.
hope eveyone else is ok, as ok as can be anyway.
lolly
x
ps sorry about spelling,
Lolly.
That’s a shame but sounds as though you’re suffering so a wee reduction in the amount you’re getting will make it easier on your body. Hope you find something soothing to eat-what about ice cream?
Hi all
Coyotegi, Shellebelle, Sands - sounds like we’re all suffering with TAX - your posts echo my feelings as well as my side effects. I am feeling OK at the moment so I feel almost human before poisoned again on Friday. I have felt a lot more weepy and depressed since the TAX than I did with FEC
Cybele - your blog eloquently putrs what I fee about having 2 more - it’s definitely 2 too many! So sorry you are having such bad side effects and awful experiences at the hospital as well - I really feel for you.
Lolly - sorry you are suffering at the moment.
Marie - I can’t hover either!
Saw the oncologist last week and my dose is being reduced for the last 2 treatments because of the side effects - particularly the peripheral neuropathyas she is worried the damage may be pewrmanent if not. She has also prescibed stronger painkillers (Tramadol) and recommended Udderley Smooth cream for my hands which I’ve ordered from Amazon. I’ve asked for a repeat precription of Difflam & Nystatin ready for the sewer mouth - I also use Corsodyl Daily. Distric Nurse did injections last time but OH says he’ll have a go this time as nurse used to come in the morning but the chemo unit nurse said probably best given in an evening as the joint pains are not normally so bad - worth a try! Absolutely dreading getting the next dose on Friday.
I don’t take Omeprazole but my GP prescribed Lansoprazole and Ranitidine which I have taken since FEC1 and since taking them so far my stomach has been OK. I had hallucinations with FEC 1 and was told it was probably due to the steroids
Hilary x
H144 - meant to say i have the utterey cream. It’s great. And on T my hands have all peeled! (not nice) I’ve not felt as tearful on T as I was on FEC. Maybe just a bit more bad tempered than usual, good luck friday. X
Cybele. Big hugs and here’s to a gentler stomach. Xxxx would you consider changing hospitals? Eg; could you go to the Marsden?
Just prepping myself for number 5 trying to get to sleep but the damn steroids have given me fidgety legs!
Lolly - it sounds like you’re having an absolutely wrotten time. I know it sounds daft but when I had ulcers on the first fec I got a type of bonjella that seals the ulcer rather than just tasting nice ( not that I would have a clue what anything tastes like any more!
Marge (chemo buddy) if you’re out there good luck tomorrow.
And to everyone else big hugs. Cressida - great to hear from you albeit an unpleasant tale!
And border collies your team sound fab. Where are you?
Hilary I hope Tramadol works for you. They told me I could double up on the dose and to take it with paracetamol but unfortunately it didn’t touch the pain in my case so I’ll be asking for something even stronger, which is a concern because I rarely took painkillers before all this poison came my way. Now I seem to be popping pills like Smarties!
I have another week to recover before my next dose and I’m going to need every last hour of it I think.
I did my own injections last time, except for the first one which district nurse did. I was having them around lunchtime but will try later in the evening to see if that helps too.
Like you I have felt very tearful since starting Tax and it doesn’t take much to start me off blubbering. Feel I’ve become a bit of a wreck now, physically and mentally. Would be happy to be put into medically induced coma for next 7 weeks!
Hillary - like shellebelle tramadol didn’t touch my back pain so have methocarbamol for the day time with cocodamol and amiltrityline at night with zopiclone to sleep which I always take when on steroids.
Just had my first chemo free Herceptin-so far so good. Radiotherapy this morning too and it was fine, but then I don’t expect to be affected for a week or so.
Unfortunately the lady next to me in the chemo suite was having her first FEc and I asked her how she was feeling. Big mistake! She got quite upset. She’d been holding it together and I reckon my sympathy just pushed her over the edge. I should’ve kept my big mouth shut.
Pain escalated yesterday and I couldn’t even lie down in bed last night. Went to A&E at 7am this morning cos the mix of Tramadol, Codeine and Gabapentin was not touching it. I can’t raise my arm above my waist now, and I can’t get dressed by myself. Cancer really is sh*t. Spent 6 hours there. Got 2 doses of morphine and a baked potato. They wanted me to stay but, out of a ward of 4 beds, 2 women were throwing up, so I did not feel it was safe. The morphine was not touching the pain either. It was making me pleasantly spaced out though. Talked my way out of the door, even though that meant no more morphine. Just told to take loads of everything. I guess this means I will be talking nonsense in any posts I make in the immediate future. (prob including this one). Popular opinion seems to be that the pain is radiation damage, irritated by chemo. Oh joy. Good job I only have 12 more chemos. Who was it who said that cancer is a fun sponge? Next week I get chemo and a CT scan to see if the pain is anything sinister.
Cybele, being a reader of your blog I just read your post and I’m so sorry you had such a bad experience re: meds.
I’m also being treated at Charing Cross and was prescribed Omeprazole when I had gastric problems/reflux. Maybe its worth speaking to the Consultant in overall charge of your care about whats happened (I suspect perhaps you have the same one as me and I’ve always found her very helpful and happy to prescribe meds for s/es if needed).
oh Cressida - you really are having a sh*t time…what was the baked potato for? to lob at someone…I would have done!
I had my 5th poisoning today - and only have one more, I cant imagine what it must feel like to have 12.
Ive got my appointment on the 20th with ONC re the supremo trial. I am really hoping to get seleced as from what i can gather mx patients with Grade 3 over 3cm are seeing benefits from radiotherapy.
Am expecting to be feeling pretty rough by saturday night when i’ve finished steroids!
Hope everyone else not feeling too bad.
Mx
Cress, what an awful experience you’re having. I’m sending love and gentle hugs.
Mandy, good luck with the SEs this cycle.
Lolly, good luck with the bloods tomorrow, let us know what happens.
Maire, rads sounds not so bad so far. What have they recommened you do with regard to looking after your skin for the duration of rads? I’ve seen quite a bit of contradiction about what to do on other threads.
Mandy, good luck with number 5.
Cybele, I hope the SEs are subsiding for you by now.
I’m having a very odd experience this cycle; my body seems to have gone into overdrive trying to recover. I wish it wouldn’t. My toxic stomach slug is still absent, but my sense of taste and smell have gone through the roof. My hair has also started to come back in patches and it hurts. Everything tastes really strong, even water. I went into town today and I could smell nearly everyone I walked passed, even the nice smells are very overpowering and the bad ones are just awful. It’s still better than the toxic tummy slug and nausea though.
Hamley - I 'm having exactly the same experience with smell and taste - everything has gone BALLISTIC.
Much more so than when it happened before. Everything smells and tastes disgusting, and it’s all so strong.
Very weird.
Mind you, I’ve still got the nausea and the bad stomach as well, although the Omeprazole has helped a lot with the latter.
My hair, meanwhile, continues to thrive - whewn I thought it was falling out last cycle, it was a false alarm.
It’s all so strange - oh, and I’m awake in the middle of the night again, after feeling fairly speedy all evening, verging on high - but I’ve had no alcohol, or other pharmaceuticals…
hI
ive popped in from january and glad i did my sense of smell is really high has been since operations and i smell weird myself like not BO but a weird smell sickly sweetish.
I start tax nxt cycle got on ok really with fec dont like change.
jenny x
Cybele, Jenny, I’m reassured to hear that it’s not just me with the heightened senses. My husband just opened a spectacle cleaning wipe and the smell knocked me sideways, I had to leave the room. All air fresheners have been removed from my house.
I’ve also been unable to sleep much recently and was still up to read your post at 2am this morning, Cybele. Whilst my body feels bone weary and fatigued, I don’t feel tired even though I am only sleeping for a few hours each night. I usually need a full 8 hours. Very odd.
The morning here is quite lovely. I went for a long but slow walk yesterday and want to do the same this morning.
Cybele, has the cold cap helped your eyebrows stay put? Mine are about 50% disappeared as are my eye lashes. It’s great to hear you’re feeling a bit better now.
Cressida-I really hope the pain is abating or at the very least getting more manageable. I have to say that even at your lowest ebb you still crack me up: baked potato and morphine should be on the menu in all chemo wards!
Hamley-I haven’t really had any advice on skin care. I’ve had radiotherapy before and they just asked if I wanted to go over the advice again. I said no. To be honest there is so much conflicting advice out there about lotions and potions that I am leaving things alone and will treat any skin probs as they arrive. I’m avoiding deoderant on one side and have ditched the bra. Just washing with simple soap daily. Hopefully I won’t get too whiffy because think chemo has knocked out my sweat glands. One thing I’ve noticed is I’m much more tired than I expected.
Hamley - in the last 18 hours I have had a sudden access of mad energy as if I were still on the steroids - I do remember this happened in an earlier cycle. Having barely moved all week, this morning I’ve been madly doing housework. I still feel kind of high and hyper. Last night I was collapsing in giggles and being very silly, and I KNOW it was the chemo. It’s so lovely to feel energy again, after a few days earlier this week when I was completely at the end of my tether.
Am finally realising that the chemo can just vary hugely from cycle to cycle, as can your body’s response. It is so, so weird.
Re eyebrows, and eyeleashes, nothing has happened to them at all.
Oh, new symptom: I’ve got a blister inside my nose, which is VERY weird - is this to do with the chemo?
Cress - hope you’re feeling a bit better today - what you’re going through sounds unspeakably grim, and the hospital really don’t seem t o be dealing with it very well xxx ANOTHER VERY BIG HUG xxxx
Sukie - thanks, am now on Omeprazole and the whole stomach thing has got a lot better - also the hospital have been addressing some of the problems that have arisen with my treatment, so things are a lot better all round than they were a few days ago x
Shellebelle, looly, h124 - hope things are getting better for all of you xxx
Mandy - hope the side effects aren’t too bad from yuor 5th dose. My God, you will be finished in 3 weeks!
I’m hoping that FEC5 will be psychologically better than FEC4, which I have found very difficult. Was just thinking that at least when you get dose 5 you will be able t o think OK, in 3 weeks’ time it will be the last dose and I will have my life back…
3 days ago I was so low that I was seriously thinking that I just couldn’t do it again, but now it seems more possible.
